The life of our family was turned upside down on June 06, 2023. Our beautiful #22qtie, which we didn't know of at the time, decided to enter the world 6 weeks earlier then planned.
We had no idea how to react to having a nicu baby, that wasn't part of our plans. Unfortunately, more bumps were thrown in our plans when our daughter was life flighted to Omaha Children's Nebraska. It was a very rough 24 hour period as we did not realize how sick our little girl was. Shortly, after arriving we found she had a heart defect, an interrupted aortic arch type B with a large VSD. With this diagnosis the medical staff started talking to us about 22Q11.2 Deletion. Never heard of it and didn't have a clue what they were saying. Like many families in the same position as we are, we received our diagnosis and had a roller coaster ride for the next 42 days in the CCU. Including her first OHS at 10 days old.
As the best that we can we started doing our research, learning about this Syndrome, and proudly sharing our daughters journey with anyone who would listen. We were able to bring our girl home to be with her two older brothers for nearly 8 months.
On March 13th, 2024, our Fallon went back to Children's Nebraska for her second OHS. She underwent a yasui procedure and fixed her VSD. To say the next 4-5 weeks were a roller coaster would the experience we went through. She was up and down, including a short time on ECMO. There were multiple days we were praying and hanging onto our faith. Fallon had recently underwent a cath lab to place a Stent in her RPA. This has helped tremendously and we hope she continues to improve. As I right this out, she is still at the CCU and we are impatiently awaiting her to get well enough to come home.
My family will be participating in the 22 for 22q run this year in honor of out 22Qtie, Fallon. Our hope is to build more awareness and understanding of what 22Q is. We are more than happy to discuss with anyone interested. Additionally I am fundraising to raise money for this great foundation in order to provide support and resources to other 22Q families.
Please help me in giving anything you can to this cause and supporting 22Q awareness. God Bless!
